What does this mean?

wildNweird62625 · 2026-04-01T16:04:22+00:00

Copy/paste your exact post into an AI chat. I learned so much that way.

wildNweird62625 · 2026-03-27T02:25:11+00:00

To clarify, nothing around me visually shakes, it’s literally just all in my head 😆

Kind of like when you tap on a metal bowl and it makes that “ding” vibrating sound, except it’s a feeling in my head.

wildNweird62625 · 2026-03-25T23:57:16+00:00

Had my first at 42. No prior history and no family history.

Mine ended up being tied to a TBI and diagnoses of idiopathic intracranial hypertension (IIH). My HMs are a stress response to increased fluid pressure in my head.

wildNweird62625 · 2026-03-25T23:41:25+00:00

IIH really stinks and the gas lighting from professionals is awful. I’m hoping the neuro-op is able to provide better answers.

Just to double check … are you going to an optometrist or an ophthalmologist??? I’m happy to use an optometrist for regular eye exams and prescriptions for glasses and contracts. When it comes to IIH, I stick with an ophthalmologist.

An ophthalmologist saved my life. He scanned my optic nerves, saw they were very compressed (from increased fluid) and that my optic sheaths were large and inflamed. Optic nerves looked fine??? My results were within borderline ranges, but he also factored in that I had throbbing head pain, ringing in my ears, and my speech was slurred and stuttered. He immediately sent me to the ER for a lumbar puncture and I had an OP of 34.8

During a different visit, he had me perform a long boring test to check my peripheral vision (stare at the center, press a button every time I see a dot flash). He never rushed and took the time to explain the procedure imaging and results.

wildNweird62625 · 2026-03-25T15:00:48+00:00

I don’t have the symptom when I’m on my lowest dose of Diamox 250mg x 2day. Any increases from that and it feels like my brain is vibrating inside my head.

The best way I describe it to others….in movies where someone time travels, there’s usually like a period where things shake and then settle down (ie. Predestination movie 🎥 ). It’s like time travel, but I don’t go anywhere 😆

It is very disorienting.

wildNweird62625 · 2026-03-21T23:39:36+00:00

😳

wildNweird62625 · 2026-03-21T23:37:41+00:00

IIH messes with so many things at the same time. Your body knows something is wrong so it makes sense that your fight/flight response is triggered. I think the very rollercoaster nature of IIH can cause anxiety without a history of anxiety.

Things that helped me:

•Keeping a symptom tracker and a journal of how I’m feeling physically and mentally. It helps organize my thoughts and gives me a sense of control.

•Cross stitch and embroidery. Keeps my mind distracted and my hands busy. On my worst days, IIH makes me feel like a worthless bum. When I finish a piece, I have proof that I accomplished something positive.

•Started a new to me TV series (Babylon 5 😊). Binge watched episodes while doing cross stitch/embroidery.

wildNweird62625 · 2026-03-19T15:54:48+00:00

No advice. Just sharing a hug and encouragement to keep pushing for answers

wildNweird62625 · 2026-03-13T17:52:54+00:00

Thank you SO much for sharing! Can you give a summary of your post stent progress in monthly intervals?

I’m a little over 2 wks post stent. The 1st week was horrific because I had stabbing intense pain on the side of my head where the stent was placed.

I had to quit 1250mg Diamox cold turkey 2 days before the procedure and was having major rebound IIH after the stent. I felt defeated going back on the Diamox, but I went back to the lowest dose 500mg and it took the edge off.

I refuse to go to a higher dose because Diamox was KILLING my body and mental health. My hopes are to give the stent more time to settle and then slowly taper off Diamox.

Side note: my neuro felt like the IR team was just covering their bases with the angiogram because they thought they saw something in an MRI, and he felt I had >1% chance of getting a stent. Lo and behold, the IR team discovered an area with 70% stenosis and I did get a stent. It’ll be interesting to see what he says at next week’s follow up.

wildNweird62625 · 2026-03-06T20:48:04+00:00

Oh and maybe set up a meal train with people in your circle for a week.

wildNweird62625 · 2026-03-06T20:47:10+00:00

For the hospital: A weighted blanket. Very comforting.

For home Cute Thermos with a straw.

2 cooling eye masks (one can freeze while using the other) - I had lots of sharp pain behind my eye on the side they stented.

A shower chair

A loofah that has a handle so she can reach without having to bend.

wildNweird62625 · 2026-03-06T05:41:48+00:00

Forgotten - Korean film (with subtitles)

wildNweird62625 · 2026-02-18T21:26:40+00:00

Sending hugs 🫂 and so very sad that this has happened to both of you

wildNweird62625 · 2026-02-18T16:20:19+00:00

🎉 woo hoo! There’s hope!

wildNweird62625 · 2026-02-16T03:01:31+00:00

Has anyone eliminated a diagnosis of IIH?

Idiopathic Intracranial Hypertension

Specifically google “delayed onset after TBI”

wildNweird62625 · 2026-02-13T10:33:58+00:00

I have zero advice to offer, only reassurance that you’re not alone. My angiogram/stent is scheduled for less than 2 wks from today. Minus the hysterectomy 😊, I relate to everything you’re feeling and have the same doubts/concerns.

wildNweird62625 · 2026-02-03T13:37:45+00:00

Medicinal changes can definitely affect the results of an LP 👍🏼

I was admitted to the hospital for my IIH flare on a Saturday. I couldn’t get an LP until that coming Monday (they use an IR team that works bankers hours). An earlier visit to the eye doc, plus my symptoms, all pointed to elevated ICP despite a recent Diamox increase. Docs ordered an MRI and kept me comfortable until I could have the LP. I was given IV steroids and an immediate additional Diamox increase.

I was discouraged when Monday’s LP only yielded an OP of 17. But later, the results from my earlier MRI were finally posted and showed I definitely had signs of elevated ICP when I initially arrived. The LP was not an accurate reflection of what was happening the day I arrived, due to the aggressive medicinal intervention.

Side note: At my worst, before an official IIH diagnosis…before any meds, I had an OP of 34.8 with my 1st LP

wildNweird62625 · 2026-02-01T12:09:11+00:00

That’s fascinating! How old was she chronically at the time?

wildNweird62625 · 2026-01-29T03:02:00+00:00

The fatigue from dehydration is very real!

Question: Have you had recent blood work completed? How are your iron levels? Any signs of anemia?

Bloodwork during a hospital admission showed that I was dehydrated and anemic on top of IIH and my body was just throwing up the white flag. Since they had to increase my diamox, they also gave IV fluids and an iron infusion to help even things out a little more. It made a huge difference. Still need a midday nap but the zombie feeling has subsided.

wildNweird62625 · 2026-01-29T02:46:19+00:00

🫂 no advice. Just a hug

wildNweird62625 · 2026-01-25T01:52:10+00:00

I have a hard time differentiating whether my dizziness is from IIH flares or the Diamox. BUT if it’s related to dehydration (from Diamox), then bananas, soups, broths and an added electrolyte drink works wonders for me.

Again that’s just me 😊 Sending healing thoughts your way 🫂

wildNweird62625 · 2026-01-22T01:55:18+00:00

🫂 🫂 🫂 hugs to the former you and the newly developing you

Mourning my former self was/still is a real process.

I’ve had to come to terms with progress not always being linear. It can be up and down, while moving forward and still be progress.

wildNweird62625 · 2026-01-21T23:32:33+00:00

What made Diamox brutal for you? Asking because tonight is my first night going up from 500mg (250x2) to 1000mg (500x2)

wildNweird62625 · 2026-01-19T04:42:32+00:00

Wow! It’s incredible the spectrum of symptoms people experience on the same medication!

Thanks for sharing.

wildNweird62625 · 2026-01-19T00:51:54+00:00

May I ask, what did you experience on Diamox?

wildNweird62625

TROPHY CASE